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Better access to the lab report

Raise your hand if you’ve ever waited a really long time to receive the results of lab tests and then were told only that the results were “normal.”

Under a proposal within the federal health care reform law, all patients could soon have direct electronic access to their lab results – without first having to go through their doctor. The proposed new rules were announced last week by the U.S. Department of Health and Human Services.

Essentially, they’d replace a confusing patchwork of privacy regulations that vary from state to state, and strengthen the patient’s right to see their laboratory test results, numbers and all.

When it comes to health care, “information is power,” HHS Secretary Kathleen Sebelius said last week, speaking at a national information technology summit where the rules proposal was unveiled. “When patients have their lab results, they are more likely to ask the right questions, make better decisions and receive better care.”

Talk about a major shift in how information is shared with patients. A handful of states* currently allow direct access to lab results, but it’s safe to say most consumers usually have to leap hurdles to get their test results, especially if they want actual numbers instead of a vague, all-purpose “fine” or “normal.”

Donna Cryer, who blogs at DCPatient, wrote this week about her surprise at receiving a phone call from the doctor’s office within three days of undergoing some tests. “I say surprising because normally I have to beg, plead, call or at least charm a nurse to get my results at all,” she writes.

The caller announced that the results were “fine.” Now in 27 years with a chronic disease “fine” is not a word I usually heard in conjunction with my blood work, so I asked if I could see them. (note: every patient should do this) “OK” was the quick answer. I could fax or email them to you. Yee Haw!! Now we were getting somewhere.

Patients are continually being told that if they want to receive better care, they need to be more engaged. But it’s hard to see how patients can develop an effective partnership with their doctor when they don’t have access to information as basic as lab test results, or when the only way to obtain it is through the filtered version they receive from the doctor’s office.

Of course, having the information isn’t the same as knowing what it means or what to do with it. Many doctors are ambivalent about sharing the full lab report, often out of a belief the patient doesn’t need to know all the numbers or won’t be capable of understanding them.

Dr. Marya Zilberberg, writing for The Health Care Blog, says that all in all, she’s “looking forward to the liberation of my lab data. What I worry about is all the calls I will be getting from friends and family to help them understand them.”

Some physicians have already raised objections to the proposed new HHS rule. One of them is Dr. J. Fred Ralston, former president of the American College of Physicians, who told InformationWeek magazine, “Lab results often contain a lot of information. A patient downloading many raw lab results over the Internet may be overwhelmed by lots of tiny insignificant tiny abnormalities that could each demand an individual explanation – and cause significant worry until those concerns are dealt with.”

But is this a valid reason to withhold the data?

Although there might be some initial confusion, many patients want to learn more about what their lab results mean and they’re eager to become educated. Overall, the trend is clearly in favor of more rather than less access, with polls and studies suggesting that online viewing of lab results, online scheduling and the ability to email their doctor are increasingly important to consumers, especially those who are younger.

If lab reports are difficult for the average layperson to understand, perhaps this is because they’ve historically been designed with clinicians in mind. One spin-off of improving patient access to lab results might be the development of formats that are more user-friendly to patients.

Allowing patients direct access to their test results also could help put an end to the unsafe practice of “if you don’t hear from us, you can assume all your results were fine.” It’s thought that as many as 20 percent of lab results fall through the cracks because of faulty systems for following up. Sometimes, as in this case or this one, the consequences can be fatal. Opening up the lab report to patients is no guarantee that oversights won’t still take place, but it’s one more backstop that might help reduce lapses in communication.

Who owns the lab results, anyway? The responsibility for ordering and interpreting lab tests still rests with the clinician. But no one has more ownership than the patient and it’s becoming increasingly difficult to justify all the barriers between patients and their lab results.

What do readers think? What experiences or difficulties have you had in trying to obtain lab results? Would you take advantage of direct access to your test results if it were available? Please share your comments in the discussion section.

*Delaware, Maryland, Nevada, New Hampshire, New Jersey, Oregon, West Virginia, Puerto Rico, District of Columbia.